Quicktopic posts: Nov 2001

[helen williams]

Just found this web site - it is very good. Have been diagnosed with KC since may. Have rgp contact lenses which i can't get on with. I also have allergies - eczema and allergic conjunctivitis. Currently off work as cannot see and cannot use my contact lenses until i go back to hospital in a month's time. Has anybody had a similar problem? Constantly rubbing my eyes which makes my vision extremely blurred. Would appreciate any comments from other sufferers.

[freddy]

I can also recommend an optician who specialises in KC. I use Shepherd and Akay. Mr Shepherd is based in Hitchen and Mr Akay in Kettering. Both do hospital work i believe.

Mr Akay spent many hours trying to get a good fit and vision prior to my graft and is helping me get lenses/glasses post-graft.

Freddy

[Tony Stigle Webperson]

Just a few points...
There are quite a few Sue's who contribute.. Can you put a county or surname initial to help us read the pages.. Thanks

Also... This discussion page is part of the U K Keratoconus Self Help and Support Groups website at. http://www.keratoconus-group.org.uk It seems from he entries & hits counter that some readers & contributors are not logging in via the site and thus missing out on many of the useful pages, links, News letters etc there... Just a thought... Tony S

[Sue B - Hertfordshire]

I used to have a lot of problems with eczema on my face and around my eyes - it made wearing the lenses that much more difficult. I used loads of emulsifying ointment (but not too close to the eyelashes - or the lenses do get greasy & blurred).
I also use a mild hydrocortisone cream (very sparingly). BUT DO BE CAREFUL - doctors & pharmacists do not recommend use of this cream on the face as it can cause thining of the skin and scarring. Are you a member of the National Eczema Society? They have a web-site (http://www.eczema.org) and an information/helpline service and may be able to offer advice. Good luck

[helen williams]

Thanks Sue B. Glad to know it is not just me! Do your eyes itch all the time? I currently use creams on my face (non steroid) - which helps - but i can't help but rub my eyes all the time. It is either the eczema or the allergic conjunctivitis. Thank you for your comments

[Sue Ingram]

Hi everyone - I definitely agree with Tony - now that there are lots more Sue's posting messages on the site, it would definitely be a bit less confusing if we could distinguish between us all! We cannot help it if we have such a popular name, can we girls? It's great to see so many new people visiting the discussion page now. I have been avidly reading all the messages about vision whilst night-driving to see what suggestions you all have. I also suffer pretty badly; in fact worse so when I am wearing my sclerals than rgp corneals. These days, I just try and do it the least possible - much to the annoyance of my other half who often gets that job! Take care one and all. SUE

[Lawrence Freeman]

Amanda, thanks for the concern. Yes my appointment is on Thursday 29th and I'll be expressing my displeasure, let's say! I know that KC can change the shape of the eyes quite a lot, and I appreciate that there's only so much the doctors can do, but i'm getting annoyed at having to change at least one of my RGPs every six months. Come to think of it, it's always at least my right eye.

As I think I've mentioned before, my lens falls out at least three times a day and it is because of a bad fit, I'm sure. It is very annoying as you're all probably aware, but something I just get on with. I'm going to try and push for a different type of lens if possible, to see if I can get any satisfaction. If not, then I'll take my duelling pistols in there and challenge someone!!

Only joking of course.

Hopefully you won't see me on the news and if anything interesting happens on Thursday, I'll share it with you.

Thanks for the support, all of you and keep smiling,
Lawrence.

[Kate Love]

As there are so many Sue's contributing to the site, do you think one of us should do some statistical analysis into the correlation between KC sufferers and people called Sue??

[Kim Remmington]

Dear Helen,
I also suffer the same problems as you with eczema and allergic conjunctivitis. My eczema is worst around my eyes (typical) and I also use hydrocortizone cream although my doctor says not to!
I also use sodium cromoglycate (probably not spelt correctly) eye drops which are preservative free (I'm also allergic to preservatives - you may be too) these are put in 4 times a day to have any effect.
Also I take antihistamines which help slightly with the itching. With all this you think I'd be sorted but I still end up rubbing my eyes like crazy once my lenses are out (I've even found a way to carefully rub them with them in!). Also I've been told that I rub them in my sleep, I don't know what to do about this!!!
I also had real difficulty wearing RGP and eventually got Softperm lenses which are fantastic. It might be worth suggesting them to the hospital, and I would try and get a quicker appt. It must be hell for you to wait for a month.
Due to my allergies and not being able to wear RGP, my consultant referred me to an Immunology clinic where they deal with allergies. After 2 years on the waiting list, I am now getting weekly injections, which will progress to every 6 weeks, for 3 years. It will take 2 years of injections to find out if it is going to work, but will be worth it if it makes it easier to wear lenses. I'll let you know in 3 years time if it works!!
Another thing I do, which may sound really strange but I always wear mascara, it makes me think twice about rubbing them as I'll end up with black streaks down my face.
Sorry I don't have any real solutions but I do think that you may find the Sopftperm lenses more comfortable. Hope some of this helps and if you want to contact me direct my email is remmington@lineone.net

PS Note to everyone who helped me recently.
I've been waiting for my appt at Sunderland Eye Hospital and seem to have got somewhere. I will be seeing them in the future, after all the hassel I've had. My new optician has a totally different view point - thank god! He has persuaded me to try Rose K lenses and although he doesn't think I will be able to tolerate them he wants to give them a try. If they don't work then it looks like I shall be wearing sclerals!!! He thinks I will find them very comfortable although he said my eye may feel 'full'. I guess most of you will know how that feels.
Anyway, I've had a lovely long wait for my appointment so I've been able to wear my Softperm for a few more weeks, but finally have to give them up on the 5th Dec! I'm really glad to have found someone willing to try out a few more options on me. They are still talking about surgery on my right eye, the preferred option seems to be to insert, plastic type semi circle rods into my eye. Has anyone had this done?
Thanks to everyone again who offered support, it really does make a difference. I imagine in a couple of months I will be asking you all how on earth do I put this fish bowls in!!

[John Smith]

Hi Kim,

Best of luck with your new lenses. I must admit that Rose K was a bit of a revelation for me... certainly more comfortable than normal RGP, and better vision too.

Alas, they aren't a miracle cure, as I'm now waiting until January for a transplant in my right eye.

John